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Has anyone used SpaceOAR gel?

User
Posted 08 Jan 2019 at 10:47

I'm due to start my RT on 11th Feb, and when I was speaking to my oncologist yesterday evening I asked him about the use of SpaceOAR gel, a "spacer" which is injected between the prostate and the bowel to reduce the chance of long-term radiation damage to the bowel. He said that the hospital I'm having my treatment at (Clatterbridge Cancer Centre on the Wirral) didn't currently use it, although they were considering doing so soon. He said, though, that he thought it was a useful treatment and that he'd be happy to arrange for me to have it elsewhere if I wanted to.

I've contacted my insurance company this morning (I have private medical insurance through my work), and somewhat to my surprise they've said they'd be happy to cover the cost of the procedure, so the way is open for me to have it if I want to.

I was wondering what peoples' thoughts were on this. Has anyone had it done? How "major" a procedure is it? Any side-effects?

Any opinions would be very welcome!

Cheers,

Chris

 

User
Posted 26 Feb 2019 at 22:09
If Space OAR beneficially provides greater separation between Prostate and Rectum where RT is to be given, I wonder whether there are situations where it would help with other forms of treatment? I was told that further HIFU would not be given to me because my small tumour was too close to the rectum which could suffer collateral damage. Alternatively, it might help with Focal Laser Ablation (FLA). I will be writing to an expert on Focal Therapy this week to discuss this possibility and will post elsewhere as this may be of interest to others but I don't wish to side track this thread.
Barry
User
Posted 14 Mar 2019 at 08:34
A "burning" sensation while peeing is an extremely common side-effect of RT and is basically caused by the radiation irritating the bladder. You may find that cutting out caffeine helps.

Hope your treatment continues to go well. I've now completed 22 out of 32 fractions and, touch wood, no sign of any diarrhoea thus far.

Cheers,

Chris

User
Posted 16 Mar 2019 at 17:01
Glad to hear you’re doing so well. My nighttime situation has improved, I’m happy to say. I only had to get up twice last night, which is a great improvement!

All the best,

Chris

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User
Posted 08 Jan 2019 at 13:43

I see that this treatment is reckoned to have beneficial effects by NICE:

https://www.nice.org.uk/guidance/IPG590/chapter/1-Recommendations

Chris

 

User
Posted 08 Jan 2019 at 15:01
I talked to an oncologist about it, should I have a recurrence and undergo RT, but he said as I haven’t got a prostate anymore, it’s not appropriate.

I looked it up when Matron first mentioned it early last year and it seems very good. I would definitely have one fitted/installed.

Best of luck with your RT.

Cheers, John.

User
Posted 08 Jan 2019 at 19:58
Hi CC, I have booted the relevant previous post up the 'recent conversations' list for your information.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2019 at 21:02
Cheers, Lyn. I definitely think I'll go for it, assuming it can be done in time for the start of my RT. My oncologist reckons the place he knows it can be done is in Northern Ireland, but that's an easy trip for me, and by the sound of it I could do it as a day trip or at most an overnight one.

User
Posted 08 Jan 2019 at 23:09

Not sure why, but I have Liverpool lurking in my memory bank as a hospital that does it? There is also a map of provision (private) here

https://www.genesiscare.com/uk/treatment/cancer/radiotherapy/space-oar-hydrogel/

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2019 at 18:37
I spoke to my oncologist's secretary today, and she told me that my oncologist knows of a chap in Leeds who can do the procedure, and is contacting him to try to sort it out for me. I only have a 10-day "window" between returning from holiday and starting RT, so I'm hoping it can be done during that time.

Leeds is only about an hour away from me, so that would be perfect if it can be arranged. Keeping my fingers crossed!

Chris

User
Posted 10 Jan 2019 at 18:50
Ooooh, I wonder if it is our Mr B?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jan 2019 at 08:21
It is indeed!

Chris

User
Posted 11 Jan 2019 at 13:37
Drat. Mr B. has got back to my oncologist to say that Leeds no longer offers the treatment, because the logistical issues aren't worth the hassle for the once in a blue moon that the procedure is requested. He doesn't know anywhere nearer than London who does offer it, and it would delay my RT to search further for it, so I've decided (regretfully) to forego the procedure and just have the "normal" RT as planned. My oncologist assured me that with modern "intensity modulated" RT the risk of significant bowel damage is very low, so I'll take my chances. Obviously my highest priority is to get my cancer sorted!

Oh well...

Chris

User
Posted 11 Jan 2019 at 15:24
My oncologist here in Coventry sniffed when I mentioned SpaceOar to him, (before my prostate surgery), dismissively saying ‘We don’t offer that here’, without any further elaboration.

Well, it’s not his bowel or bladder likely to be perforated if things don’t go to plan.

I hope your treatment goes to plan, and enjoy your holiday.

Best of luck.

Cheers, John.

User
Posted 18 Jan 2019 at 00:52
I had SpaceOar treatment one month before my seed implant. I was my doctor's first patient. I had found out about Spaceoar from my own research and decided I wanted it to reduce the side effects of the radiation. Ask my doctor about it and he had also been talking to the SpaceOar people. The procedure was done in his office with a SpaceOar Rep and another Urologist selling/demoing new Ultrasound Machine. The procedure isn't that long. But hope the shots used to numb the area works better for others than me. Anyway the SpaceOar went in with no problems. Sore for a few days but not bad and could feel a little pressure on the inside for about 3 or 4 days, no pain from SpaceOar. When I had the seeds implanted the members of the team were impressed with the way the Prostate and Rectum were separated. It's been four weeks and the one thing that doesn't have pain is my rectum.

I live in the US and have Medicare HMO. I checked before treatment and it was covered. However, when the doctor billed for the SpaceOar the HMO denied payment. Doctor office has resubmitted the bill. You can watch the procedure on YouTube.

Chris the SpaceOar website has a list of doctors that perform the procedure. Maybe you can a different doctor in just inject the SpaceOar.

Johnny

User
Posted 26 Feb 2019 at 17:51
I had SpaceOAR gel “installed” on 14th Feb (such a treat for Valentine’s Day!, not). My surgeon used a general anaesthetic, he wasn’t at all keen on the “local” idea when I asked how it would be done, but I guess for some patients that might be the preferable or only option depending on other health issues.

I’m due to start radiotherapy tomorrow.

I had MRI and CT scans after the insertion of the spacer. This, my 3rd, MRI is apparently to check that the spacer is in the correct place - it doesn’t show up on the CT apparently. The CT is for planning of the therapy. I think I have those the right way around. No pain or discomfort to mention immediately after the procedure, but some discomfort at various points during the last week which seems to relate to fullness of bowl and or bladder. Seems to be easing in the last 24hours anyway. Will ask the oncologist about it this evening. It never got beyond what 2 paracetamol could cope with.

I have private health insurance from work, but I was told by the onco that they will not pay for the SpaceOAR; however the radiotherapy provider do pay for it as part of the deal apparently. Either way, it’s in! The radiologist told me they have been doing it for all of their prostate patients for the last 5 or so months.

User
Posted 26 Feb 2019 at 19:36
Interesting! Where are you being treated?

Chris

User
Posted 26 Feb 2019 at 20:44
Radiotherapy is happening in Windsor. The service provider company in question was linked to by an earlier poster (Lyn) in this thread.
User
Posted 26 Feb 2019 at 22:09
If Space OAR beneficially provides greater separation between Prostate and Rectum where RT is to be given, I wonder whether there are situations where it would help with other forms of treatment? I was told that further HIFU would not be given to me because my small tumour was too close to the rectum which could suffer collateral damage. Alternatively, it might help with Focal Laser Ablation (FLA). I will be writing to an expert on Focal Therapy this week to discuss this possibility and will post elsewhere as this may be of interest to others but I don't wish to side track this thread.
Barry
User
Posted 14 Mar 2019 at 08:30
Quick update. One month today since SpaceOAR insertion. All discomfort gone.

Revelation: cranberry juice!

I still had some small discomfort remaining when I went to pee. Radiologist suggested “try drinking cranberry juice”. Either I am the most suggestible guy ever, or lucky timing, or, Cranberry Juice is magic! Drank a 250ml glass of said magic fluid with my dinner last night. Yes, it is a bit diuretic! But this morning, no discomfort! Hoorah. Seems unbelievable. Only time will tell.

Off for my 12th “fraction” today.

User
Posted 14 Mar 2019 at 08:34
A "burning" sensation while peeing is an extremely common side-effect of RT and is basically caused by the radiation irritating the bladder. You may find that cutting out caffeine helps.

Hope your treatment continues to go well. I've now completed 22 out of 32 fractions and, touch wood, no sign of any diarrhoea thus far.

Cheers,

Chris

User
Posted 16 Mar 2019 at 16:11

Great to hear that you’re making good progress Chris. I’m a little way behind you at 13/37 of my RT complete. The stinging sensation has been there since two days after the SpaceOAR was inserted. But it could now be down to the radiotherapy. The 2nd suggestion was Ibuprofen, but so far I’ve stayed off that.

Like you, so far no diaorhoea but occasional mucus with the ’gas’, which keeps one guessing! As it happens, my caffeine intake is substantially reduced at the moment as part of my bid to manage the fluid balance. I don’t need anything extra stimulating the kidneys when I am trying to hang on to just the right amount at the right time. 

Don’t want to speak too soon/brag/make you jealous, but so far I’m only having to get up once a night. I can only sympathise.

I had a session of Relaxation therapy last week courtesy of www.pennybrohn.org.uk. I went in somewhat sceptical, but now I can’t wait to try it again! Highly recommended.

User
Posted 16 Mar 2019 at 17:01
Glad to hear you’re doing so well. My nighttime situation has improved, I’m happy to say. I only had to get up twice last night, which is a great improvement!

All the best,

Chris

User
Posted 30 Mar 2019 at 11:42

By about four weeks after SpaceOAR insertion the discomfort that I had was gone. All I have now is the stinging sensation when I pee, a standard radiotherapy side effect apparently, which I will say is helped in my case by a small daily intake of cranberry juice. I got some pure juice and I dilute it with water; it’s quite sharp to say the least but at least it doesn’t have a load of added artificial sweeteners like the “juice drinks” that are more commonly available do. I now know you can get concentrated capsules of cranberry from health food stores, but I haven’t ventured down that road yet. The “mucus” thing seems to have mostly stopped now too.

I’ve now had one reflexology and one acupuncture session courtesy of http://www.pennybrohn.org.uk/ and they both seems to help. Really looking forward to the next session in each case. Also had a fitness assessment yesterday prior to commencing a twelve week long “Exercise Medicine” program.

Now 23/37 on the radiotherapy so we are counting down now!

Edited by member 07 Apr 2019 at 12:00  | Reason: Not specified

User
Posted 30 Mar 2019 at 11:52
Delighted to hear that you're doing so well. I'd suggest asking to see a doctor and getting a prescription for Tamsulosin when you have your next session - it helps enormously with the peeing situation (as I've just discovered when I inadvertently forgot to take it for two days!).

Chris

User
Posted 03 Apr 2019 at 21:31

Not having heard of SpaceOAR until coming across this thread, I went off to read the blurb on it, and I'm very interested in having it done. Can anyone tell me what it cost them?

I also asked my MacMillan nurse about it today, and she knew of it and that people had had it done privately. She said it has been known to slip out of place occasionally. 

User
Posted 07 Apr 2019 at 11:58
Cost of SpaceOAR to me was zero. My private healthcare insurer apparently will not pay for it, but the private radiotherapy provider [see earlier in thread] that I am fortunate enough to be with (paid for by the healthcare insurer, go figure) is so convinced of its benefits that they have been paying for it for all of their prostate cancer patients for about 6 months now. Surgeon muttered something about it costing “about five grand”. Procedure was carried out privately at an NHS hospital.
User
Posted 07 Apr 2019 at 12:05

My insurer would have been happy to pay for it too, had I been able to find somewhere to have it done. Unfortunately I wasn't able to do so in the time available to me. I seem to recall that I was told that the cost (to my insurers) would have been around £3000, taking into account the cost of the operating theatre, anaesthetist, and so on.

Interestingly, my oncologist at the Clatterbridge Cancer Center told me that they were planning to trial its use there later this year, which would suggest that it might then be available to NHS patients.

Cheers,

Chris

Edited by member 07 Apr 2019 at 12:07  | Reason: Not specified

User
Posted 07 Apr 2019 at 17:31

It is approved by NICE providing it is done by someone experienced.
https://www.nice.org.uk/guidance/IPG590

Reading some of the papers on it, the success rate improves during the first 30 procedures a surgeon does.

One area where there is less evidence on effectiveness is where the PC is locally advanced, and there are concerns it could move some local micro mets away from the prostate where they won't get zapped.

Mine may be locally advanced, but as far as I know, that's on the opposite side of the prostate (anterior).

I have sent a message to my oncologist in advance of the next consultation that I'm interested in it, so I'll see what he says. Plan is whole pelvis EBRT and HDR brachytherapy, but waiting for HT to bring PSA down first. I do have private cover, but several people (including my GP) advised me to stick with NHS for the diagnosis stage, so I haven't used the private cover yet.

Edited by member 07 Apr 2019 at 17:41  | Reason: Not specified

User
Posted 07 Apr 2019 at 17:53
It was available at St James oncology centre in Leeds but they have recently withdrawn it - not enough people were requesting it, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Apr 2019 at 20:02
I know - I was going to be done by your Mr B, who then advised that they’d stopped doing the procedure there!

User
Posted 13 Apr 2019 at 10:46
As I seem to be the only person posting on here who has actually had the SpaceOAR procedure, I guess an update is in order.

I now have just 4 radiotherapy sessions left (out of 37). As I mentioned previously, I had some discomfort at first after the SpaceOAR insertion, but that subsided after about four weeks and has not returned. Comparing notes with one fellow patient, same procedure by the same surgeon, same he experienced zero discomfort from the SpaceOAR. Radiographers and other staff at the centre where I am being treated have expressed surprise at my mention of the said discomfort, so I get the impression it isn’t usual. And don't get me wrong, it was only ever mild discomfort and certainly wouldn’t change my decision if I had to make it again.

If my mild level of side effects is anything to go by then it is doing a great job. But I don’t have another “me” to act as a control subject for comparison so it's impossible to know how things would have been without it.

I’ve now had 3 exercise sessions under the supervision of the physiotherapists and as someone who would never, ever, have set foot in a gym I’m really enjoying it. It’s all about building muscle. The only other people there are in the same or a similar boat so it’s all very positive and we can laugh with each other as we go through, or see each other go through, the same moments of discovering muscles we never knew we had.

User
Posted 13 Apr 2019 at 11:59

The distance the SpaceOar creates should make a significant difference to side effects.

Sounds like the exercise classes are a tonic in many ways.

User
Posted 13 Apr 2019 at 13:53
According to the scan it has created about 10mm of space between my Prostate and the “Organ At Risk”, i.e. the rectum. I think about 5mm is more usual, so this might explain my earlier discomfort, my Prostate is only 16cc anyway. But without the SpaceOAR I think the two organs would pretty much be in contact with each other. My oncologist was delighted at the extra room that the surgeon had created with the gel.

Re: exercise; ideally one would exercise immediately before radiotherapy apparently so as to increase blood flow. However, this is not very practical for us chaps with PCa due to the need to arrive on the table with a full bladder at ‘lighting up time’!

User
Posted 13 Apr 2019 at 14:26
One day, this will be available to everyone and people will be horrified that men used to have RT without it.

The exercise class sounds brilliant. Physios are underrated when it comes to men with prostate cancer / recovering from PCa treatment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Apr 2019 at 18:01

In my reading of research papers, 16mm spacing is mentioned quite a bit. One of the failure modes is where it ends up non-symmetrical giving a much smaller spacing on one side, but even spacings below half this still give most of the benefit.

Regarding exercise, there seems to be quite a bit of evidence suggesting this slows most cancer growths (not just PCa), and in some cases, more effectively than any drugs can. My consultant is a big believer in this, and is part of a group to get their patients cycling. That was the Prostate Peddlers event today which I posted about, and I've just come back from. It was great to be cycling in Hertfordshire today with a load of PCa patients, and several consultants, a trainer, and their families. I am a cyclist anyway, but there were bikes available to borrow, including electric bikes, and some simple cycle routes, for those who don't have a bike.

 
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